Abstract and Keywords
Consumers of health and mental health services are afforded numerous legal rights. Broad categories of rights include self-determination, access to health information, protections for mental health consumers who are hospitalized, and a right to community integration. Two areas of consumer rights are emerging: a greater emphasis on human rights, and the right of consumers to participate in developing and implementing programs and services within the organizations from which they receive services. Various means for enforcing rights exist in both the private and the public sectors. Social workers play critical roles in ensuring that consumer rights become a reality.
Keywords: rights, human rights, self-determination, informed consent, right to refuse treatment, right to die, advance directives, HIPAA, confidentiality, involuntary commitment, community integration, empowerment, organizational decision-making
Consumers of health and mental health services in the United States are afforded numerous legal rights. Some are controversial, while others are difficult to enforce. In addition to legal rights, two areas of rights are emerging, those being a greater emphasis on human rights, and the right of consumers to participate in developing and implementing programs and services within their service organizations. Social workers play a critical role in making consumer rights a reality.
Legal rights can be grouped into four broad categories. One category is self-determination. Aspects of self-determination include informed consent regarding treatment decisions, the right to refuse treatment, the right to die by refusing life-sustaining measures or by engaging in assisted suicide, advance directives, and abortion rights. U.S. courts have upheld aspects of each of these rights, although Oregon is the only state to have assisted-suicide legislation. Some rights are contracting; for example, some states make it more difficult for women to get an abortion. Other rights are expanding, for example, using advance directives not only to regulate medical treatment if incapacitated, but recently to regulate psychiatric treatment during the onset of severe, acute symptoms (Srebnik, 2004; Srebnik & Kim, 2006).
Some rights continue to be controversial, such as the right to die, exemplified in the highly publicized death of Terri Schiavo in 2005, and abortion rights, which remain a highly divisive, political issue in the United States.
A second category of legal rights is access to health information. It has long been held that consumers have a right to confidentiality and privacy of health information. The Health Insurance Portability and Accountability Act (HIPAA), through its Privacy Rule effective in 2003, modified privacy rights. HIPAA increases consumers' access to their medical records and ability to correct inaccuracies. It also waives written authorization to release health information for routine releases, and instead requires that health providers give consumers a copy of their written policy that indicates how Protected Health Information will be shared routinely for treatment or payment purposes. Some social workers believe that aspects of HIPAA may actually decrease privacy of health information, and call upon the profession to ensure that consumers know their rights and the limits of confidentiality and be vigilant in protecting consumers' health information (Yang & Kombarakaran, 2006).
A third category of rights is associated with psychiatric hospitalizations. U.S. court cases in the 1960s and 1970s increased consumer rights by restricting the use of involuntary civil commitment to dangerous individuals, requiring due process rights for commitment hearings, setting minimum treatment and physical plant standards for hospitals, and recognizing the right to least restrictive treatment alternative.
A final category of rights is associated with the community integration of people with medical, physical, or psychiatric disabilities. The Rehabilitation Act of 1973 prohibited discrimination based on disability among entities receiving federal funds. The Fair Housing Amendments Act of 1988 prohibited discrimination based on disability in public and private housing. Two years later, the Americans with Disabilities Act of 1990 sought to prevent discrimination based on disability in the areas of employment, transportation, and access to various types of public and private facilities and services. The most recent change, Olmstead v. L.C., by Zimring (1999), found that people residing in mental health facilities had a right to community services under the Americans With Disabilities Act. This right was limited, however, by requiring that mental health professionals and consumers must approve discharge from hospital into the community, and that states consider available resources when establishing needed community services.
Despite the array of legal rights, a legal right does not exist in the United States to health and mental health services or to the necessities to sustain health, such as food, housing, employment, and income supports. Over 40 million Americans are without health insurance, and many more are underinsured. Internationally, access to health and mental health services, and to the necessities to sustain health, is gaining support as a basic human right (Bell, 2005). This is reflected in the United Nations Declaration of Universal Human Rights and especially in the International Covenant on Economic, Social, and Cultural Rights. Social workers are being called upon to support human rights within the United States and internationally (Steen, 2006).
Right to Organizational Decision Making
Also emerging is the right of consumers of health, and particularly mental health, services to participate in developing and implementing the programs and services in which they participate. Such participation is consistent with the Code of Ethics of the National Association of Social Workers (2000), can improve the effectiveness of services, promotes consumer empowerment, and assists in consumers' recovery. Means of participating in organizational decision making include serving on agency boards of directors, task forces, and committees as full voting members; serving on consumer councils that have decision-making power or advise program administrators; being involved in all phases of the program evaluation process; and operating consumer-run programs and services (Linhorst, Eckert, & Hamilton, 2005; Salzer, 1997).
Numerous means exist to enforce consumer rights. Federal, state, and some local governments have rights enforcement bodies. Seeking remedy for perceived rights violations through these bodies is a long-term process, however, and often unsuccessful. In the case of changes resulting from the Olmstead decision, for example, Mathis (2005) reported that efforts to further integrate institutionalized persons into the community have been very slow, and most states do not have the resources to comply with the spirit of the ruling. A second means of enforcement is through the Centers for Medicare and Medicaid Services, which evaluates compliance with consumer rights for organizations that receive Medicare or Medicaid funding. A third means is through nongovernmental bodies, including the Joint Commission on the Accreditation of Healthcare Organizations, the Commission on Accreditation of Rehabilitation Facilities, and the National Committee for Quality Assurance, that accredit health and mental health organizations and incorporate consumer rights into their accreditation standards. A fourth means is through the inclusion of some rights into codes of ethics in professions such as social work, medicine, nursing, psychology, and others. A fifth means is through the national system of state protection and advocacy organizations. These federally funded, nonprofit organizations are charged with protecting the rights of people with disabilities. A final means of enforcing rights is through quality improvement activities to monitor program compliance with rights within service organizations and to develop corrective actions when rights violations are detected.
Implications for Social Work and Future Trends
Social workers play a critical role in the realization of rights for consumers of health and mental health services. At the direct service level, social workers should educate consumers about their rights, report violations of rights when observed, provide support to consumers seeking redress for rights violations, and work respectfully with consumers in organizational decision making. Most important, social work administrators should develop a culture within the agency that is respectful of rights. At a minimum, administrators should develop clear statements of rights, train consumers and staff about consumer rights and means of enforcement, use multiple means to integrate consumers into organizational decision making, establish quality improvement systems to monitor consumer rights, take definitive corrective action when rights are violated, and treat consumers with respect in all interactions to model appropriate behavior to staff and to support consumers. Finally, at the public policy level, it is most important for social workers to advocate for the legal right to a full range of health and mental health services, and to the social and economic resources needed to achieve and maintain health.
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